4D – Karolinska Institutet & SLL

Shortening time from symptom to diagnosis

A delayed diagnosis of rheumatic diseases affects the health of the patient. It causes unnecessary pain, periods of increased angst and anxiety, and in the case of arthritis, it’s an active disease which can cause un-repairable joint damage which leads to disability. The cost for both individuals and the state increase.

This is why it is important to discover, diagnose and start with treatment as early as possible, preferably 3 months after the first symptom in order to improve the prognosis (of a good life). However, this is not the case for everyone. Researchers at Karolinska Institutet and doctors at the Karolinska University Hospital had discovered that many patients come late to specialist care and wanted to change this situation.

”It took almost two years before I got my diagnosis. What happened in my body during all that time? Did it worsen my prognosis to feel healthy? I think a lot about that.”

Patient, 21 years old

How can this problem be solved? And can we use digital services and technology in a meaningful way to support this case? Our world is being digitally transformed. Step by step we are making processes more efficient and changing our daily lives to the better with help from digital systems, services and applications. Even though it might happen less rapidly within healthcare than within other areas, citizens or patients are pushing the development forward due to their digital competence, awareness and the increasing habit of using digital services when interacting with both public and private actors. The 4D-project team took this into consideration and gave the task to us at Ocean to find out why the patient journey is so long, and if it was possible to shorten it with help from a digital screening of some sort.

”We found out that the first thing people do is to google their symptoms. That meant we needed to create a service that is present online, where the journey begins.”

Sofia Svanteson

Design strategist

We got the problem description by specialist doctors. But we expanded the perspective by talking to primary care, physiotherapists, health counselors, patients and relatives. Because if not all target groups are involved in innovation projects, we can not ensure that we meet all necessary needs, and then the service can miss its’ objectives and goals. Basically it's about devoting time to problem definition by truly understanding all stakeholders' needs. The team at 4D had a hypothesis about the fact that the time from first symptoms to diagnosis could be shortened by capturing the patients as early as possible in the healthcare journey and give them guidance and support through a digital platform. We interviewed and observed patients, primary care physicians, physical therapists, specialists and so on to understand more about this journey. The contextual interviews gave us many valuable insights, such as:

  • The journey often begins online, people google their symptoms. Healthcare needs to be present with validated and trustworthy information.
  • GP is not interested in patient's research. There is mistrust towards information from the Internet. Both patients and GPs need validated sources.
  • The patient's story gives the GP too little information. The GP does not automatically ask for more information. They need a decision support.
  • GPs often have difficulty in examining joints. The patient's story and input will thus be even more important.
  • Specialists send referrals back to GPs when they are incorrectly filled out or incomplete. This can be perceived as discouraging to the GPs, and it can cause friction between the different parties.
In-depth and contextual interviews with patients, care givers and researchers helped us structure the Patient Journey Map, in which we mapped emotions, thoughts, insights, pain points and gaps in the journey from first symptoms to diagnosis.

All types of interactions, emotions, thoughts and needs were visualized in a Patient Journey Map. Focus was on illustrating points of light (occasions where the patient is satisfied with the care and reception), problems (when the patient is dissatisfied) and weaknesses (situations where patient needs are not met). This gave insights into what different delays in the journey depend on. We came to the conclusion that we should create a screening, in a responsive format, designed together with medical specialists, primary care physicians and patients.

  • Questions should be based on scientific research and specialists’ knowledge but asked in such a way so that patients understand them.
  • The result of the screening should be educational. The patients should be able to learn from their symptoms.
  • The composition of the result should be meaningful to primary GPs. It should help them diagnose and write a correct referrals.

Prototypes of the online screening and the resulting decision support was developed. The person who experience joint pain responds to ten to twelve questions about their symptoms and gets a description of what his or her answers means, an overall statement and a decision support. In a number of iterations and versions of the service we tested the content, the interaction and the experience of bringing a decision support to a GP. The test results were so good that the Stockholm County Council decided to give the go-ahead for a sharp service and launch it nationally. With this new service the whole team hope to close some of the knowledge gaps and change the asymmetries in healthcare.

call-out

Every day 400–600 people take the online screening test in Sweden

In user studies, the doctors and patients mention they believe the first visit/meeting at the primary care is efficient and focused with the new decision support. Patients say they feel empowered and enlightened in the situation with healthcare with the new decision support.